cancer

Is that the right word for this? Epilogue. What comes after the end of the story? Maybe so… whatever it is called, there is more…

On Tuesday, May 24th, 2016, I left the hospital without my baby.

I felt empty. I was in shock. I’m pretty sure I was numb. How could I have come here with him and now I was leaving without him? How could that be? How could I leave him behind?

Where was his hand to hold crossing the street to where the car was parked? How could there be an empty seat next to Shane when I turned around in the car? I was still looking for him, expecting him to be there.

I had this insane urge to turn back to go get him. The only thing I can compare the feeling to is that moment when you think you’ve lost your child in a crowded place. You turn away for a moment and when you turn back around, they are gone. That moment of sheer panic. The one where your heart drops, you get that pit in your stomach. That feeling becomes permanent.

Still, a year later, if I let myself go there, if I lift the buffers, that sheer panic is there. My heart races, the pit is in my stomach, I’m ready to come unglued. And I’m pretty sure that feeling will be there as long as I live. And I hate it. I can’t fix it. I can’t find him. I can’t ever make that feeling really go away.

I miss Wyatt. I miss what he was and what he would have been. I miss what I had with him and I miss what was yet to come. I miss the future with him that no longer exists. The things I looked forward to with him that will never be.

All that being said, there is beauty to be found in all of this pain and sadness. Wyatt is still with me and in my heart. He visits me in a favorite song, a treasured memory, an owl that waits for me on my walks in the park, special moments that seem to arise out of the blue. Wyatt’s spirit continues in all those who knew him or now know of him. Those who remember to be kind in his honor. Those who take a little more time to be with those they love. Those who choose to live with passion. Those who remember a sweet boy who was always ready with a big smile, a heartfelt laugh, and a warm hug.

So as much as Wyatt’s story has an ending, it is also a beginning and a continuation. It turns into a story of beauty that follows great tragedy. It is painful and bittersweet, yet filled with love. Love for a beautiful soul gone too soon. Love that wasn’t done loving. Love that still continues in the face of loss. Love that continues to carry on a legacy. Love that is shared between family and friends to honor a sweet sweet soul.

On Tuesday morning, Brooks and Casey showed up and I was exhausted. Casey handed me a coffee and a breakfast sandwich and took me for a walk. Before we left, we had talked to the doctor. The news wasn’t great, Wyatt had AML, not ALL. ALL is the “better” form. As in more treatable, more curable. AML isn’t so good, but the doctor assured us that we could develop a treatment plan. We were confident that we were going to beat this.

I talked to the doctor about the night before and he said that he could change Wyatt’s medication to control his pain better. I felt relieved leaving to go get some fresh air. Wyatt was in good hands with Brooks and we were on our way to curing this.

On the way back into the hospital, I called my mom to let her know what was happening.

We got back to Wyatt’s room where Brooks and I took turns holding his hand and talking to him. They needed to do another chest X-ray. I took one look at the X-ray and my heart sank. His entire right lung was collapsed again. He was filling with fluid.

The next thing I remember is holding Wyatt’s hand. Suddenly he was wheezing badly and wasn’t really responding to me. The nurse was worried about his oxygen. The doctor was looking at the X-ray… this was not good.

What I remember is a frenzy. Nurses, doctors. Brooks talking to the doctor. “We need to intubate him.” What? What is happening?

Before I knew it, the doctor was getting ready to intubate Wyatt. I was holding Wyatt’s hand and trying to reassure him. I don’t know if he could hear me. The alarm on the oxygen sensor was screaming that he wasn’t getting enough oxygen.

The doctor said that I could stay, but said that, “No parent should have to see their child be intubated.” I believed him. As Wyatt was pulled up to the top of the bed, his eyes flew open and they met mine. That would be the last time I would see his eyes.

I held his hand until the very last second and then kissed him and told him the doctor was going to take care of him. I told him that I would be right here.

I stepped outside of the room.

Doctors, nurses scurrying around and trying to help him. Then it happened. His heart stopped. That damn alarm went off. The blue light above his room flashed and the alarm called all of the critical care staff. My baby’s heart had stopped.

Nothing prepares you for that. How could his heart have stopped? I was just holding his hand. I had just looked into his eyes.

The next two hours were hell. His heart would stop two more times. That third time, it never started again.

There is so much more that happened, so much more hell, so much more emotion. But I’m just not ready to share some of those pieces. Some of it is still just too raw.

The night before Wyatt died is the night that haunts me. It’s what wakes me up at 2:00 in the morning and keeps me from sleep. It makes my insides hurt. It makes my stomach turn. It’s the thing that makes my heart hurt.

Wyatt had a rough night that night. Brooks and I had agreed that he would go home to be with Shane. We were worried about him. And he would gather up a few more things for Wyatt and I.

Casey and Jenny (my two angels that I will share more about in another post) brought me dinner and kept me company for a bit. Then they stood watch while I showered.

I thought I was settling in for the night after everyone was gone. I pulled the chair out into a bed and tried to get comfortable after making sure that Wyatt was ok.

But this would not be a night for being settled. Wyatt was up quite a bit. He couldn’t get comfortable. He was having trouble going to the bathroom. Between juggling the chest tube, all the other wires connected to him, and a bed pan, this was no easy feat. And he was in pain. Every time he moved, it irritated the chest tube. He ended up having an accident, so the nurse and I had to change him and the bed. Poor kid… more being jostled around.

His stomach was upset and he vomited at least once or twice.

His pain meds weren’t really cutting it anymore. We struggled to manage his pain. And on top of the pain, he was running a fever. So he had to take Tylenol, but ended up vomiting that back up. It felt like the nurse was in our room almost constantly trying to help him and monitoring him.

And all the while all of these other things are going on, we need to keep his oxygen level up. So I’m encouraging him to take deep breaths.

Earlier in the day, I had been encouraging Wyatt to take deep breaths, modeling deep breathing for him (there’s the teacher in me). He finally looked at me and sternly said, “Mom, stop doing that!!!” Like I said before, he still had some spunk. So as I was monitoring his breathing that night, I was trying not to agitate him.

I felt so bad for Wyatt and so just wanted to help him. I was frustrated, heartbroken, feeling helpless. My poor baby was in pain, scared, and exhausted. And nothing I was doing seemed to help.

He finally fell asleep in this crazy position kind of sideways on the bed. I wanted to adjust him to make him more comfortable, but I didn’t dare move him lest I wake him up.

I can’t remember who got there first in the morning, Brooks or Casey. But I was so relieved to have someone there. I was exhausted. And scared. Why was last night so hard? As soon as the doctor came by he said that they would be adjusting Wyatt’s pain meds to keep him more comfortable.

Looking back now, I hate that night. I question everything that happened, everything that I did. Did I do enough? Should I have asked different questions? Should I have demanded to call the doctor? Should I have made the hospital staff do something? Could they have done anything? Was there anything they could have done? Would it have mattered? I’ll never know…

Today was the day that Wyatt would have a Bone Marrow Biopsy, Spinal Tap, a pic line put in, and his first dose of chemotherapy. I still hadn’t quite grasped that. Chemotherapy. That meant Wyatt had cancer. My baby didn’t have cancer… I was in denial.

We were looking for answers with these procedures. What type of Leukemia did Wyatt have? Why was the fluid in his chest? How were we going to get him better? I would have given anything to have these answers, to know what to do.

We went with Wyatt to the OR. I got all suited up so I could walk into the room with him. I remember looking at myself covered from head to toe in that paper hospital outfit and thinking, this must be scaring Wyatt to death. I tried to joke about how funny I looked and make light of it. I walked down the hall with him holding his hand the entire way. Then we went into the operating room. I remember the stark white walls and the big round lights. The last time I had seen a room like this I was having Wyatt via C-section.

I kissed him as the medicine knocked him out and went to the waiting area. And I think I held my breath.

While I was waiting I could hear an alarm. It was the alarm that sounds when a patient’s heart stops beating. It calls all the critical personnel in the hospital to the patient’s room. I knew it wasn’t for Wyatt, but it was scary none the less.

After his procedures, Brooks and I sat with Wyatt while he slowly came out of the anesthesia. One of the Child Life Specialists brought a therapy dog by. We had already met these dogs the day before and I tell you what, they are awesome. I’m not sure who depended on the therapy dogs more, Wyatt or us.

We eventually got Wyatt back to his room and found a decent movie for him to watch. Brooks had brought him some juice and we were trying to get him to eat some jello. Now we just had to wait. Wait for the results of those procedures. Wait for the answers that we didn’t want.

Wyatt’s chest tube was put in in his room on Sunday, our first full day at the hospital. A red haired, fireball of a surgeon would do the procedure. She was confident and I felt good about her. She assured me that she would get it done and get him feeling better.

The procedure was done and Wyatt was put on pain meds. I can’t imagine the discomfort of having a chest tube. But Wyatt was a trooper.

We spent the day talking to doctors, worrying, keeping Wyatt comfortable, reassuring him and keeping him occupied with Star Wars movies.

Then the worst news. Today they would tell us that it was likely that Wyatt had Leukemia. We would be introduced to the Oncology doctor. And eventually the Oncology Team.

The Oncology doctor had a fairly thick Asian accent. He came into the room to see Wyatt, said a few words to him, and then asked us to step outside. I bent down to kiss Wyatt and told him we would be just outside the door talking to the doctor. Wyatt looks at me and says, “What’s with the Japanese guy???” I was a bit embarrassed, but relieved to see that he still had a little spunk. Wyatt was never one to hold back what he was thinking.

The Oncology doctor told us he was fairly certain Wyatt had Leukemia though they were not sure what form. He told us that most childhood Leukemia is curable and I held onto that thought with every ounce of my being. Tomorrow Wyatt would have a bone marrow biopsy, a spinal tap, a pic line put in and his first dose of chemotherapy. Holy crap…

Wyatt was on oxygen and the mask was making him a little crazy. The sweet EMT somehow rigged the mask to make him more comfortable. Then his nose kept running, so we were rummaging around for tissues. I finally found some in my purse.

I so wanted to talk to Wyatt and hold his hand, but I was in the front, he was in the back. And there was a lot of equipment between us.

The driver was sweet and did her best to stir up conversation to make the drive go by a little faster.

As we approached the hospital, I didn’t know what to expect. It was late, now past midnight. The streets were deserted. And it wasn’t exactly easy to get into the hospital. We had to find someone to unlock a door for us. Luckily that only took a minute or two.

I knew Brooks was there, he just had to find us. He ended up meeting us at the room. The room where we would spend the next few days, our last precious days with Wyatt. The room where Wyatt would die.

We would be taken into the room and be greeted by a doctor. He had been waiting for us. A CT scan would be ordered (I think). I went with Wyatt where they slid him into the machine. He was still so good. He felt so bad, but he did what he was told. And he didn’t seem scared. Though I’m sure he was.

As the images came up on the screen, it looked like something had completely filled Wyatt’s right lung. It looked worse than the X-ray at the ER. We would find out that his chest cavity was filled with fluid and had collapsed his right lung. He would need a chest tube the next day to drain the fluid.

I took this picture once we were able to settle Wyatt for the night. We would be waiting for the surgeon in the morning to put in a chest tube. I still couldn’t really fathom what that was or what that meant.

I was happy that he was sleeping, seemingly peacefully. But inside, the monster was still raging against his little body. A monster that we still didn’t know was there.

It was a long night, watching him sleep. Holding his hand, touching him, watching him breathe.

It broke my heart to see him like this… oxygen mask, heart monitor, hospital bed… And not a thing I could do to fix any of it.

Hell started today. A year ago. The worst thing to ever happen to me started unfolding quickly a year ago today.

We all got up on a Saturday morning. Brooks and Shane went to look at a truck because Brooks had just sold his and he needed a new one. Wyatt was still not feeling good. Brooks and I knew one of us was heading to Prompt Care with him today. Even though the doctor had said to give it through the weekend, we knew we couldn’t. He was surely dehydrated by now. And we really needed to just get him better.

While Brooks and Shane were gone, Wyatt laid on the couch. I was trying to get him to drink and eat some toast. I buzzed around the house, tidying up. And subconsciously I think I was praying Wyatt’s condition would suddenly change and he would start feeling better.

At about 10:00, Brooks and Shane were not back yet, but I decided I needed to do something and told Wyatt we were going to Prompt Care. He didn’t want to go. He tried to cry, but he was so weak I don’t think he really could. I vividly remember slipping his slides on his feet for him and shuffling him out to the car. And then shuffling him from the car in to Prompt Care.

We waited a little bit to be seen. Once we got into the room, and the nurses and doctors started to look at him, I started to get scared. I could tell one, they didn’t know what was wrong, and two, whatever it was, was serious.

They took his oxygen and it was 83. That’s not a good number for your oxygen. I didn’t know that at the moment, but I quickly learned an awful lot that day. The nurse seemed a little confused and said she thought maybe they weren’t getting a good reading because he was dehydrated. I would later find out, that wasn’t the case. That number was correct.

After some further examination of Wyatt, one of the doctors finally said, “Your little boy is very sick. He needs to have blood drawn and we can’t do that here. He needs to go to the Emergency Room.” They were going to send us by ambulance, but were honest that it would take some time. I signed a release saying I was transporting him against their recommendation and took him myself.

Within this span of time, Brooks had come to Prompt Care, stayed for a bit and then left. Wyatt’s team had another playoff game and I sent Brooks to take care of the team before I knew we had to go to the ER. We really didn’t know what was going on and obviously didn’t really grasp the seriousness. I don’t think anyone really knew. And I kept reassuring Wyatt and myself that everything would be ok. All along, no one had any clue that Wyatt would die or that he had leukemia.

At the Emergency Room, we would be brought in and Wyatt checked over again. He was so good through the whole thing even though he felt horrible. They took bloodwork and chest X-rays. They initially told me he had pneumonia and that he would probably have to stay a few nights. I was ready to hang out with him for the few days and get him better. Not great news, but I felt as though everything would be ok. I had answers and we were developing a plan. I let Brooks know, hoping to put him at ease.

Then the pediatrician on-call came in to talk to me. He was concerned. He showed me Wyatt’s chest X-ray. He showed me the area of fluid in his right lung. The problem was that he couldn’t tell if the fluid was in his lung or around his lung.

He then went on to tell me that Wyatt’s platelet count was really low and he didn’t know why. All of his other numbers were fine. It didn’t make sense. I remember forcing the question to come out of my mouth…”Is this Leukemia?” He said it wasn’t likely because all of his other numbers were fine. His white blood cells looked ok.

With those two concerns he was sending Wyatt to Sutter. They were better equipped to handle things beyond pneumonia with children. If Wyatt needed a chest tube eventually, Sutter was better prepared to do that.

My mind raced. A chest tube? I didn’t even know what that was. But the bottom line was that I wanted Wyatt to be wherever the best care was.

I quickly agreed, paperwork was signed and preparations began.

While all of this was happening, Brooks’ parents had come to the hospital. And then went to the ball field to get Brooks and Shane. I can’t remember exactly when Brooks got to the hospital or the conversations we had. Once we knew Wyatt was going to Sutter, Brooks left to go to the house and get some things for Wyatt and me and himself. Shane would stay with Brooks’ parents. Brooks would drive to Sutter. I was going in the ambulance with Wyatt.

My mind continued to race. What did this all mean? What was really wrong? How long would we be in the hospital? How quickly could they get Wyatt back to himself? And still, I never even considered that he was dying before my eyes.

So many other things flash through my memories of that day. Blurred conversations. Fear. Strained glances exchanged with Brooks. Wanting to cry, but holding strong for Wyatt. The IV that they couldn’t get in Wyatt’s arm and that was initially put in wrong. How patient he was even though I’m sure it hurt like crazy. The different hospital staff who tried to make Wyatt smile, tried to help him be less scared. How I kept telling him it would all be ok. How I held his hand. Watching him sleep and being glad he could at least rest. Thinking how we were going to figure out what was wrong and we were going to fix it so he could get back to school and baseball.

It wasn’t until about 10:00 or so that the ambulance was finally ready to take us. Wyatt was loaded in. One of the scariest sights in my life – watching my child loaded on a gurny and loaded into the back of an ambulance. I was instructed to get into the front passenger seat (though I wanted to be in the back with Wyatt). And the next leg of our journey began.

I never would have imagined that as I left the house with my sweet boy that morning or as we drove the long drive to Sacramento that night, that I would not be bringing him back home.

A year ago today I thought Wyatt had gotten a good night sleep after a long week of baseball and school and fun. We got up and got dressed. And we headed out to Eastside where I dropped him off for some batting practice before the first play off game.

That night Wyatt woke up vomiting. We had heard there was a stomach bug going around. We hoped it would be quick, so he would be better by Monday. We had no idea what we were in for. This would not be the short lived stomach flu we thought we were up against.

This picture was the start. A year ago today on a Friday afternoon Wyatt came home from school and he was exhausted. I didn’t think too much of it because little league had been in full swing, he was practicing during the week, and school was exciting with all the spring events. I thought this was just my exhausted little boy showing signs of a very busy and hectic, but fun life.

Looking back now I realize how wrong I was. He wasn’t exhausted, his body was fighting a monster.

I look back now and think about what I thought was a sweet picture of a tired little boy and I can’t believe what the meaning of this picture really is. It’s really the beginning of the end. Wyatt fell asleep on the couch that night really early. I can’t recall if he ate dinner or not. I remember shuffling him to bed thinking he just really needed a really good night’s sleep. The next morning we got up and got ready for practice at Eastside. I was relieved to see that he felt better in the morning and he was his usual chipper self. He couldn’t wait to get to practice, couldn’t wait to get into the batting cages.

Later that night is when I thought the stomach flu had hit him.

Over the years, I took a lot of pictures of Wyatt sleeping. From the time he was teeny tiny all the way up until this last picture of him sleeping. He always looked so sweet sleeping. And I always just wanted to crawl up next to him and cuddle him and love on him. What I wouldn’t give for one more cuddle with my sleeping boy.

Sleeping in my bed next to me… a common occurrence on a Saturday morning after Brooks and Shane were already up.

Out cold in Trinidad after a full day of serious fishing and tide pool exploring.

Asleep on my mom’s couch after a full day of visiting and fun in Philadelphia.

Our Location

Text Widget

This is a text widget. The Text Widget allows you to add text or HTML to your sidebar. You can use a text widget to display text, links, images, HTML, or a combination of these. Edit them in the Widget section of the Customizer.